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12 September 2011

The bliss of his fourth day was short lived. Later that night after we were asleep, the oxygen levels in his blood had desaturated to a point where they needed to intubate him again. Because of the swelling in his windpipe and because Ewan fought the intubation so fiercely, it took five attempts to intubate him and several hours with some very patient and tender NICU nurses before he had calmed down enough to rest.

So on his fifth day, he was unconscious again and his nurse made sure we knew not to try to wake him. No stroking, just gentle pressure on his back, she instructed us. The lights in his room were dimmed, the curtains drawn, and the room deliberately hushed.

September 23, 2010 (5 Days Old)

At the end of that fourth day, we had met with a doctor to go over the details of a procedure Ewan was scheduled for on the following day: the cath (short for catheter) lab. The doctor who would be performing the procedure spent a good hour or so with us going over the basics of Ewan's condition and the wide range of possibilities for what they might find. The purpose of the cath lab procedure was to build an accurate road map of Ewan's heart. With this road map, pediatric cardiologists and surgeons would meet together and create a plan for surgery. The doctor acquainted us with the risks of the procedure, which were minuscule -- the chances of anything going terribly wrong were somewhere around one percent or less.

But we were on the wrong side of the statistics once more. Things did go terribly wrong.

We had seen Ewan off for the cath lab procedure around three o'clock in the afternoon. We were told to expect a page when it was done. Exhausted, we had gone up to our tiny bedroom for NICU parents and took a nap together on the twin bed. When we met with the doctors downstairs at around 5 pm, we were told: Petermann family -- you're about to get a lot of attention. It didn't sound good. Something had happened in the cath lab and Ewan's oxygen levels had deteriorated to around thirty percent. Emergency surgery was the only option. The only chance for his life was to go in without a plan. It was a rush acquainting us with the risks of surgery and signing the necessary consent forms. They quoted a 30% chance of death. I started sobbing hysterically.

It was a night of much waiting, of updates from long-faced surgeons who kept coming back with the news that what they were trying wasn't working; that Ewan had the smallest pulmonary arteries they dared operate on; that they were taking some extreme measures to make the surgery a success; that if their third option for placing the shunt didn't work, there was no other choice but to close him up and say our goodbyes.

We braced ourselves for the worst, and I requested a chaplain.

But the morning came and at about 3 o'clock, we learned they had made the third option work. Ewan's heart was too weak to come off of bypass, so he was coming out on ECMO (a machine that oxygenates blood and circulates it through the body). But he was still with us.

Once they had him settled in a little before 4 am, we got to go see him.

September 24, 2010 (6 Days Old)

I had seen pictures of babies just after open heart surgery, so I knew what to expect. I wasn't shocked. I had even seen pictures of the plastic tubing of the ECMO circuit sewn into the open chest, so that didn't surprise me either.

But that doesn't mean it wasn't traumatic. Going from birth to this in six days was too much. It was hard to think about what had been done to him -- of the trauma his body had suffered in those hours between 5 pm and 3 am. Understanding that these measures were absolutely necessary to save his life didn't necessarily make it any easier to accept that his chest had been cracked open, that knives and needles had been slicing and sewing inside him. That the surgeons, at a great disadvantage for having no plan, had to move quickly with the skills and the tools at their disposal to try and save his life. I was glad I had taken my time right after his birth to keep my hand on his unbroken chest so I could remember that feeling in the days to come.

Seeing him in that moment, I was mostly elated -- just so thankful that Ewan was still with us after a long night that had us mentally and emotionally preparing for his death. Thankful that even if it was a small one, he still had chance. Later that day, we went to the hospital chapel together, fell on our knees, and thanked God for the life of our son. When the drama of that long night had faded in the coming day or two, I was still elated and thankful, but also quietly seething with jealousy for all the parents I knew who didn't have to face this with their children. I wanted to go back to a place of blissful ignorance and inexperience where heart defects and children's hospitals were concerned, and to know what it was like simply to have a baby and bring him home.

I had become acquainted with a dark and insidious side of life I had no care to know, and there was no unknowing it. In that moment, I lost something I would never get back.

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In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. This is one of those photos. I will share more as his birthday approaches, and have something special planned to share with you for the day itself.